I am hoping that today's blog will be helpful to those of you experiencing the depression that has paralyzed me. Please contribute to the discussion as I have asked in the blog, and let's see if we can pull each other up from the bottomless hole in which we find ourselves.
Joan, excellent blog! I long ago embraced my anger. So often I have stood, hands clenched in fist of rage, screaming out to God and the world about the fate of my sweet husband. Honestly, I think it is the only thing that has kept me sane. (Or semi sane)
Above all else, I am angry I lost the other half of me. Regardless of what any of the experts might say, I know I will never be whole again. I am also angry, and still, quite bewildered, that THIS is how our fairytale must end....
Presently, I am both angry and deeply saddened about Lynn's recent health issues. Truly, enraged! But this is a good thing...I will use this anger, burn it as the fuel I need, to get us through this latest crisis.
I now understand my feelings, it is anger that is holding on to me. Along with the list so far, ad to it…. I am angry that my family… sister, mother, son and brother in law left me high and dry, like nothing was going on. I am angry that Alzheimer caused me to give up my job to care for DH. I am angry that Alzheimer took DH to soon and he was not here to see our DD graduate from high school. I am angry that Alzheimer took DH to soon and was not here to walk our DD down the aisle for her wedding. I am angry that Alzheimer took DH to soon and he missed the birth of our newest grand children.
And most of all, as Nikki said, Alzheimer took the other half of me…….
It seems I am angry most of the time. I am angry that DH has AD I am angry that I have lost my spouse I am angry that I am not allowed to have emotions and feelings I am angry that I had to quit my job to take care of DH I am angry that at my age I am a prisoner That. DH and I cannot do things that other couples can travel, talk, etc. I am angry that I have to handle everything That DH doesn't know why I am tired, sad, and angry
I am not angry at DH. At first I was so angry at God.
Interesting......I have had depression for many years (controlled by medication), & I know I have been angry about a lot of things for a very long time. Strangely enough, it has mostly been directed at Dan, at disappointments & disillusionments as I perceived them. Maybe expectations were too high, I don't know
I think that at the present time, I'm mostly angry because I feel so unloved, so unappreciated. He never was an openly loving person, but now the emotional divide between us gets wider every day as he gets further away. I'm angry that there is no hope of ever even trying to resolve those issues now. I'm angry that there is no close companionable "golden years" (boy, is that a bunch of crap!).
I guess I'm angry that my life now seems to be on hold, just biding my time, waiting to die........sheesh, how I hate that!
I am not sure why I haven't been angry. Have I accepted our fate? Yes. I really think I have. I don't know how. Maybe I have built a wall. But for some reason I truly feel that I have accepted my husband's early onset Alzheimer's disease. We have two young boys. My husband won't see them graduate from high school and will never experience being a grandfather. I wish I had a magic pill or some words to help those who are angry. I completely understand why you are angry. I guess I look at life as one day at a time. None of us know what tomorrow will bring. Unfortunately Alzheimers is part of my journey. I hate Alzheimers. I hate it. I can't change it and I don't have any control over its course. I am heartbroken. But I can't be broken. I am at peace with the unfair direction my life has taken. I wish everyone in this fight the strength to get through the anger. It's not fair. This us the cruelest of diseases. I try every day not to let Alzheimers destroy me, my boys or our life. I am not angry. I hope and pray that anyone who is angry can find peace.
I don’t feel angry, just extremely sad and depressed to see what this disease has done to a very honourable, kind, good man. We are older – he is 87 and I am 79, so we have had our good years together. For that I am thankful. We all have to find peace, somehow. Like Christine 0815, I also hope that we can all find peace.
Joan, thinking about anger almost made me laugh. Most days I feel so sad and beat down that I can barely move. Other days I'm so angry that I almost wish somebody would try to steal my purse in the parking lot of the grocery store, because then I could actually HIT somebody! There's so much anger inside me that one of these days this little old lady is going to wind up on the 6:00 news for her Incredible Hulk imitation (without the part where I rip my shirt open).
Some of the things I'm angry about - (couldn't we all go on for pages and pages?)
DH's family. We never hear from them. As DH says, "I guess to them I'm already dead". Hearing a beloved spouse say that is enough to enrage anybody.
A sister I thought I was very close to. On the rare occasions that we talk on the phone now, she never asks about DH. She never mentions him at all.
All the doctors who we thought would help us at least figure out what to expect with this disease, and who we found out knew less about this than we did. Do a lot of doctors cut class on the day they cover dementia in medical school?
People who seem to think that this is just our lot in life, so why make a big deal out of it--while their lives go on normally.
Mostly I'm angry that both our lives have been completely, totally destroyed, and one of us is dying, and no one seems to care, or even to notice. No, maybe that's depression talking. Or depression and anger. Lots and lots of anger.
Maybe my depression is suppressed anger I just never considered that. I think my faith journey speaks to thankfulness for all I had with Frank those 60 years. But I may be angry as I think of his older brother (by 4 yrs) still with his wife and enjoying all that we no longer have. Then I know that is jealousy something I strive against and I try to be happy for them. I miss small things that I see other couples enjoying and wonder if they even appreciate their time together. I never talked with a counselor after his death as there was over a year waiting list -- well it's been two years now and I could have been seen by now. I was angry that there was such a long waiting time I remember that. Dear Joan I pray for your peace of mind in this journey you had no choice in making. There seems to be no easy path. But thank you again for this forum that lets me get out what I'd never allow anyone around me to know.
I've been thinking about this some more. I do feel sad much of the time, I feel anxious all the time. I feel frustrated that there is nothing to be done, that there is no way for things to get better (hopeless), but I also think that at this point, my actual anger is mostly because of things that should have been, but weren't & because of things hoped for that will never be.
I will say though, that I just don't wonder why us - my thought is why not us. Nobody deserves this, but nobody is exempt from it either.
I think i'm wandering here, kind of getting away from the topic, but I do know that anger & bitterness will kill you from the inside out. Just keeps eating away..... just praying that each of us will be able to deal with it in the best way we know how to do. Personally, I TRY to look upward instead of inward, but it ain't easy!!!
I have to add, I feel so free. Just putting this down into words has been so freeing. I don't know why. But the depression/anger is gone for now. I guess I needed to acknowledge how I felt. But until now would not. How could I be mad at family, the way my life turned out etc. I was still very blessed. But putting those feelings behind a wall only hurt me more in the long run. I know that anger and bitterness only hurts us. But we are human, disappointment is real in our life. And that disappointment causes pain, and that in-turn causes the anger/bitterness leading to the depression. We need to acknowledge the anger to move forward.
I know that through the years that I have let others down. I hope they have forgiven me. As I work to forgive others.
So glad that Joan shared her thoughts on this. You have helped me in so many ways.
The pain in my heart is still there, just not the first thing I feel. Working on counting my blessings…...
I agree with Blue. Just writing down all of the anger has helped free me from some of the depression. I guess that's why the counselor told me to write it all down.
I also agree with Mim. I have never thought " why us?" I have always thought " why NOT us?" Everyone has to deal with something, and I just figured Alzheimer's was the bad hand we were dealt. I have been heartbroken, sad, and devastated, but I honestly didn't realize how ANGRY I was. It does feel good to rage and scream and get it all out.
Joan, this is such a great post and expresses what all of us feel but may be unable or unwilling to confront. I share most of what everyone has said and I think for me the anger rises up over the loss of the little things - no more walks hand in hand, no more dinners sharing a glass of wine, no more conversation. I look at my formerly loving, smart husband at his care facility in his Depends and not having a clue who I am, after just three short years, and I want to scream. I hate having to do it all by myself, even with supportive kids, and most of all I just hate that it can never be different. Stay strong, everyone. I do believe there will be life after AD, but what it will look like and how long it will take to get there, no clue.
1. I am angry that I never had a retirement with him. 2. I am angry that I had to spend down all my money for his placement. 3. I am angry that I have to take care of everything. 4 I am angry that all my so called friends have left. 5. I am angry that his sister never once called to see how he is or how I am. 6. I am angry that I have to start over and really become a new person at 67. 7. I am angry that I had to quit my job to take care of him. 8. I am angry that most Of my family has no idea what I have been through or what I am going through. 9. I am angry when I see my husband a once brilliant man who can now hardly locate the bathroom 10. I am angry that even though he is placed I am still confined to this disease as his caregiver. 11. I am angry that no one can give me a timeline as to how much longer I have to deal with this.
Thanks joan. This is for starters. I knew I was angry but never took the time to get it down on paper.
Anger is part of grief. I agree with Blue that it is much better for us to deal with our emotions as they come. Building walls never worked for me. Nor was I one who could "emotionally divorce" the love of my life. My pain might have lasted longer? And perhaps the final goodbye might be even more difficult because I never let go of the love.... but for me personally, there was no other way.
I am not saying I am consumed in anger, just that anger is a reasonable reaction to what we have lost. I have also been through the other "stages of grief" many times as well. Mostly now I am only angry when I feel Lynn is not getting the care he needs and deserves. In February, it will be six years that Lynn has been in a facility. Advocacy is the toughest job I have ever had! I am NOT a control freak by any means, I just want the best care possible for my husband. I go in every day, and every day there is some minor/major thing. It leaves one wondering where the heck did common sense go? And, if I didn't come in every day, how bad would his care be? It wears one down....and it pisses me off!
The only thing I do worry about is the anger I feel towards those who claimed to love us, but abandoned us. Still, if I dwell on it I can almost feel the rage building inside me. I try to work on it ( if I have emotional energy to waste, which is rare) But even now, just writing this... I am getting mad. Lynn was a fantastic Dad, brother, husband and friend. It is just unforgivable to me that he would be abandoned by those who claim to love him the most.....
Pfffft! Perhaps their "punishment" is all the years they have missed with Lynn. Among the pain, there has also been countless, glorious, wonderful moments. For them, and so much more, I am eternally grateful.
Nikki. You are my hero. I truly don't know how you do it. I sorry that some have deserted you and Lynn. It is unimaginable but it happens so often. It is their burden to deal with. I am so sorry. I can't believe Lynn has been in a home for six years. Dear god why? Why does this happen to so many wonderful people?
Christine, first let me say you are a ray of sunshine for me on this forum. I am glad you joined :)
Yes, I agree with you, it is their burden to carry. I hope one day I can let go of that anger....
And yes, 6 years in a facility... so hard for me to believe! I truly hope we can have 6 more years, or more...as long as he isn't suffering.... I have said it before, and it still rings true today, I could happily live out the rest of my life just as I am now. To me, I have the best of both worlds... precious time with Lynn, and the opportunity to go home to rest for the next day.
I, too, am angry and I feel guilty about it. I am angry he has left me in this predicament. Left me to make hard decisions. Left me alone. For not being here for our dreams of retirement. Angry his daughter is a pain to deal with thru this. Angry I have little family support. Angry that something always happens to prevent me from moving on without him. Angry my beautiful intelligent husband is gone leaving behind a shell of himself. I don't have him to share things with, come home to, take care and protect me, no more laughing and teasing together. No more intimacy. This anger is exhausting and no one seems to care that this disease has affected me as much as it has him. Angry his daughter cares only about herself. I am so tired. All I do is take care of him, worry about him, fight his battles for him. Where is our lives, my life. I feel like the walking dead.
I do not feel anger. I have always been able to accept things that I cannot change. I do feel sadness for Dh not being able to enjoy all the things he worked so hard for.He does not complain when I leave the NH every day. He says he knows I can not care for him at home. He was always so considerate fo my well being.
yhouniey, I really like your comment. Oh, that it could be that way foreverybody! You are blessed.....
Incidentally, I have MOMENTS of real anger, like today when he acts like a five year old! Honestly, I just felt rage inside, but all is calm once again. I just have to remove myself from the conflict, go to a different room, etc. Actually a five year old can be disciplined, a 79 year old with AD cannot!!
Because of things that happened before AD, I long ago trained myself to be calm, to avoid anger, to let things go, don't argue, you won't win every battle anyway. Eventually, every tomorrow changes things--good or not so good. The Serenity Prayer. That does not mean, going thru it, I did not cry hysterically in private and scream at the universe, 'just give me back my life.' I've never been able to find the words for the way I felt, and I'm a writer, but it's not anger, not depression, not envy, way beyond sadness and feeling left out, not getting to grow old together. I used to talk about our growing old together and he'd always refuse to consider that. He'd always say, 'we're just a couple of punk kids.' That's how it was, he'd be working on his roadster or some race car and I'd be making tuna sandwiches, just kids. So that's what it says on our common gravestone, 'Just a couple of punk kids.' My DH has been gone 11 years and I've had a gentlemen friend most of that time, so I know that I've 'moved on,' that I don't dwell on things, but he will always be in my heart and I wouldn't want that to change.
1. I am angry that I never had a retirement with him but am thankful we did have a few years to follow our dream. 2. . 3. I am angry that I have to take care of everything. 4 never had friends to leave us. 5. I am angry that his -change to brother - never once called to see how he is or how I am. 6. I am angry that I have to start over and really become a new person at 62. 7. I am angry that I had to quit my job to take care of him. 8. I am angry that most Of my family has no idea what I have been through or what I am going through. 9. changed: I am frustrated and cry inside when I see my husband a once mr fix-it unable to figure out how to fix anything now 10. 11. I am angry that no one can give me a timeline as to how much longer I have to deal with this.
I think 11 really gets to me - how long will this last? His dad went 25 years. His sister went 9 years. 9 years is too long for me which is 3 more years. His term life insurance ends in March, then I won't be able to afford it. Then when he dies I will have nothing.
I am angry because I planned to draw early SS but found it would put me over the limit for Medicaid so I would loose my insurance. If not for the cancer diagnosis in May, it would not concern me.
I am angry because today I found out the car needs new struts - one is leaking. Seems like cost are piling up right now.
With all the stress the last 8 months, especially the last two with the apartment I am emotionally exhausted. I really don't care to do anything but know that is not an option. I am angry that he can no longer help with the decisions, work to supplement our income, and so, so tired of trying to remember when he repeats something it is cause he does not remember.
Susieq, your local hospital social worker might be an option to call for a list or recommendation. If the hospital has a memory or geriatric center the social worker there might be a very good resource. That's how I found the counselor that I saw who was very good. Also a call into your local Alzheimer Association and ask them. Our chapter will provide lists but no recommendations so you'd have to do the work talking to some to see if they're a fit.
Is there an Alzheimer support group nearby? Perhaps you could join that to be with others having similar experiences and through the members or facilitator find a counselor if you still feel the need.
If all those resources fail, try your Local Area Office on Aging and speak with a social worker there.
Good luck with finding someone to talk to...it really helps.
ps do you have private health insurance (not medicare/Medicaid?) If so you can call their customer service number or go on their website and find a list of professional who accept the insurance. Costs vary widely depending on the professional's credentials - a psychiatrist will be very expensive without insurance, a psychologist will be less expensive and a social worker is about the same as a psychologist. Most will accept Medicare.
I knew a retired social worker at the gym where I worked out, and I asked her. She recommended one that she had gone to. This counsellor turned out to be a gem. I still go to her once a month. Caregiving takes its toll even afterwards.
Yikes, Charlotte! I just read your post. The list sure is cause for anger but the part about the SS, the Medicaid, and the car is almost worse. It seems like every time you take a step forward, you are forced to go two steps back. I can certainly understand why you are discouraged.
Another great blog Joan and thank you! I am going to journal about anger as I too have been what others would call depressed. Well, I call it that too.
I am functioning on perhaps 10% of what I used to. By that I mean I used to be a fast moving, high energy, skillfully juggling multiple balls kind of gal.
Now I exist only. Between advocating for my husband and basic needs for myself no energy for other things.
A few things I know I have a simmering anger about: So many people for so long telling me there was nothing wrong with my husband. A woman telling me I should have divorced Duncan instead of him going to a facility. My husband's son who lives in Europe and won't hear anything about his dad because he can't handle it. Friends who are all gone. Trying to figure out who I am now. People who never ask how my husband is, let alone how I am. And if they do ask, lowering their eyes not wanting to listen. Feeling like an outcast of society.
I see a counsellor every two weeks and am going to explore anger versus depression with her. Thank you everyone. Your words always help me so much.
In the beginning, what I was angry about was that we had been sentenced to live in “Dementia World.” I had already served time there when my father had AD, so I knew what it was like. But it turns out I did not know the half of it, including the fact that much of our sentence would be served in solitary confinement
At first, much of my anger was generalized but some of it was aimed at people who tried to sugarcoat the practical impact of the disease. As the years went on, I became so exhausted that I did not have the energy to be angry. Now my anger only flares up when someone trivializes what we have been through or tries to convert me to their Pollyanna way of thinking. I have accepted what has happened to us but I will never accept that, “It’s all for the best.”
What saved me from anger and despair was the practical help I got from others who allowed me to shift some of my burden to them, including the aides who served as my husband’s companions, the day care center he went to, and especially the veteran’s home where he has lived for the past five months. He is getting excellent care and he is actually happy. I am so grateful for that. But I know that if he were not being cared for well or if his mood deteriorated, the anger would come right back.
This anger topic has certainly struck a chord in so many of us. I have heard or perhaps read that depression is repressed anger, so maybe those of us who have been very depressed are definitely very anger.
I am angry about so many aspects of this disease. I'm angry that my DH recites the same conversation topics day in and day out -- when are we eating, what are we eating, are we going out, when are we going to bed, etc., etc., etc. I'm angry that I have no patience with him and yell at him to stop asking the same questions. I'm angry that this disease has brought out the worst in me. I'm angry that I'm a prisoner in my own home now since my DH no longer could tolerate adult day care.
I'm angry that my husband's family turned on me and accused me of causing the disease because I "didn't cook right" (meaning healthy). I'm angry that they have totally forgotten about him, no calls, no cards, no letters, and yet he was the most responsible of them all, providing for his parents and yet his efforts were never really acknowledged by them, probably because they're all guilty or were excused because they couldn't afford it themselves.
I have learned how to take one day at a time because it seems that's all I can do. I'm angry that I can't feel more loving and charitable at times toward my DH, yet the memory of his lack of emotional support and understanding during our marriage looms over me and I can't seem to shake it.
I'm angry that I feel selfish for wanting more acknowledgment of what we caregivers endure. The emphasis is so focused on the individual with AD that the caregivers' needs are never validated or minimized.
Elaine - I am so emotionally exhausted that I too answer in an abrupt way when he keeps asking or making the same comment. I am thankful he forgets - wish I could.
I don't know if anger is the right word or extremely frustrated and tired. I do try to take things as it comes but find I have to work hard to care. I think the rainy, gray days we have had, which is unusual for this desert area, has contributed to the down mood. Tomorrow the sun is suppose to come back, then I can go finish winterizing.
Time change will probably play havoc too with moods and sleep. Slept until 11:15 this morning. Of course it was after 2 before I got to sleep.
I'm angry that our family and friends only focus on DH and forget how much I need love and attention and care more then he does. I'm angry because I'm not well but they go and take him out or visit and I never see or hear from then. " Oh Mom your tough, you can take it" I can't vacuum, stiffer or wash my floor because of my back pain is so bad. Money is tight and I would sure be happy for help but not going to happen. I guess I am just plain angry about this life that I don't want but have no change in sight.
I have things that used to make me angry but it had nothing to do with my husband becoming ill. Oh I recognize all the things that were listed..it didn't make me angry so much as it made and still makes me sad..and there is a difference between the two. And when my husband of 36+ years died, almost 15 months ago now but seems like last week, I am not angry that he is gone.. I miss him and I would love to have him back with me but not with the illness he suffered through with as much dignity as he could...I just miss him and that makes me sad. And the fact that his family, my in laws, have become so distant makes me sad. One can only do so much reaching out before becoming a pest...so there is is...sadness more than anger for me. I have been on Zoloft for almost 2 years and my doctor is tapering me down on the dose now, maybe even to get off of it..that is yet to be decided but at least I can manage on a lower dose. I do sometimes think, however, that the medication may have been a safety barrier and as the dose is lowered further the emotions may surface..but I doubt it will be anger...just the feeling of loss and sadness.
Tonight I am angry with myself. I reached out to Lynn's children to let them know their Dad is struggling.... What's that old saying, something like “Insanity is doing the same thing, over and over again, but expecting different results.” Pfffft!
I am angry with all those people who ask what can they do to help and then don't do it when you tell them. I am angry with those people who kept saying "he's just getting old" and then accuse me of not coping with the illness. All his friends and family who have nothing to do with us or who turn up once to gorp and then you never see them again. On the other hand I am overwhelmed by the kindness of some people who we hardly know who do so much to help and support us.
Sad to Mad! Mad to Sad! This disease causes the roller coaster of emotions. Mad ...Angry. Gives energy, power Even though it is uncomfortable. Sad is so much harder to bare for me. Anger is an easier place to be
I'm angry, sometimes furious, that life isn't fair. I'm angry at family that are not involved with my DH care. I'm angry at facilities that cover up their negligence. I'm angry at the health care system that does not treat this disease as a medical one financially. I'm angry that there is nothing to be done to stop this disease!
I ditto so many of the above comments but after so very many years now (starting 15yrs) I have grown to accept and absorb the anger that has accompanied this disease. I also felt all of the above but mostly sad that the love of my life must leave me so that I can regain what life has in store in the future. very unfair for us all that they must leave us in our lonliness so that we can begin to live again if that's possible-if we can find our way in the after. divvi
all those things you have all written were experienced by me, so much anger. Mostly towards uncaring people.
And now, I am barely angry at anything. Funny yeah, it just abated after Dado died. I keep my deep feelings for remembering him. Also, I think, now that the journey has changed, I feel deserved pride and honor that I have no regrets, and did the absolute best I could. When I think about my anger toward...jerks...and if I could have handled it differently, I use the words of Nikki...pffttt...they could have looked in to me and understood how hard it was. Instead of giving me, oh it could be worse, count your blessings, do something for yourself, all the while not doing a damn thing for us.
divvi - 15 years? Oh my dear heavens, how? And I remember Elizabeth saying 14 years! There are no words to describe how I admire anyone & everyone here for their strength, courage & endurance - I only hope I can attain that same level eventually. It's only been 4 1/2 years for me (well, since diagnosis anyway), so I'm still a novice. I must say, the thought of 15 years is a rather frightening prospect - ay yi yi!!!
I should add that I realize even with the courage & strength, there has no doubt been many, many times of anger, frustration, sadness, grief, etc., but to be able to rise above is a gift.
I was just reading Wolf's essay on the Widows and Widowers thread and I realized that one of the things he said is really the crux of our situation: We are not allowed to hope. No wonder we are angry. I guess all we can do (and which I have tried to do) is to create a small space with order and some modest rewards within the larger AD world of chaos and despair.
Nikki, I know you must be angry and upset that his kids are not receptive and responding to the warnings you are giving them. When that sad day arrives when Lynn slips away from this disease, the one who loved him the most dearly, you, will be supported by those who have not deserted you...but his kids...well you did your duty...you told them what they needed to know and the ball is in their court. You don't owe them a thing more.
Don't waste one more second on them..spend your time caring for Lynn and yourself nad treasuring every moment you share with him.
I don't know, I guess it depends on how one defines hope. If not for hope, I would not have survived thus far. I am full of hope! And without it, I have nothing.
Mimi, thank you for your wise words.. I will try to do just as you advised ((hugs))
I think Wolf was defining it as hope for his wife's survival or her ability to retain her sanity and that's the way I was defining it, too. There is no effective treatment for the dementing illness we are talking about on this site. And therefore no hope for our spouses' recovery.
If you are talking about your own hope of living a productive life during or after your spouse's AD, that's a different thing entirely, as is the belief in eternal life. What I'm talking about is the fact that when our spouses are diagnosed, there is no hope of recovery and the certainty that they will lose their minds.
Hi Myrtle, I don't often go to the widow thread so I haven't read Wolf's post, but yes, I am aware there is no cure. It is a cruel fate we all share. Though I know it is a fatal disease, I learned to live in the present and enjoy what we still have left at any given moment. It has been a lifesaver for me.
We have been on this journey for more than a decade now, but it hasn't taken away my hope. By that I don't mean I am holding out hope that a miracle will happen that will cure our spouses.. it simple means that I still have things to be grateful and hopeful for and about. This includes simple things, like hoping Lynn will have a good day.
Maybe it is a game I play with my tortured mind? But if I let go of the hope, I will have nothing left.....
Nikki, No, it is not a game you play with your mind. I agree with you about the small hopes and rewards. Tonight, I visited my husband and he was very affectionate, smiling and kissing me and holding my hand. That is what I meant when I said that we can create a small space with order and some modest rewards within the larger AD world of chaos and despair.
What I was describing as a lack of hope (and what I think Wolf was talking about, although I can't speak for him and you can read it for yourself), was the despair of hearing that my spouse had a terminal illness for which I knew there was no effective treatment and which would cause him to lose his mind.
Myrtle, you have made the distinction quite well. The lack of hope at the diagnosis is that there is absolutely no hope that there will ever be a miraculous cure. For most other diseases with a dire prognosis there has occasionally been a spontaneous remission or cure. These oddball cases are not understood but probably result in an immune response of some kind (and I am speaking mostly of cancers here). There has never been a miraculous reversal of AD. Correct me if I am wrong, but I don't think a saint has ever been credited with a miraculous cure in true Alzheimer's Disease.
I remember sobbing uncontrollably when the diagnosis was made and in retrospect I attribute my response to the ripping away of all hope. Previously, the diagnoses were treatable, if life changing, but the third diagnosis was not. Thus began the roller coaster of anger and depression as my life changed as much as my spouse's. This at the same time that badly needed support dried up.
We do learn to alter our perception of hope and as Nikki does, focus on the small hopes like a good day, a flash of recognition. This is how the human spirit survives.
It saddens me deeply to learn of all the individual struggles that Alzheimer's disease has imposed on so many of us. Reading all of these posts are just simply heartbreaking.
I would like to offer a bit of advice, to you Nikki, my hero :) who has reached out to Lynn's kids....I too have three stepchildren. They hate me (long story). My husband, Pat, raped his business financially to continue to provide a wonderful lifestyle for them....summer home in Newport RI, their mother never had to work and was home with them, private high schools and college education (Harvard, Northeastern and Holy Cross) and no student loans. Did not live with them and divorced their mother but still drove them to school, parties on the weekend and attended every sporting event. Well, Nikki, these kids (except one has reached out a tiny little bit in a self serving way) they have not bothered to call, stop by nothing....nothing....absolutely nothing....no call on Father's Day...no call on his birthday. As a result, my kids and I are struggling financially. We have the house that we live in....all college savings and retirement have been poured back into the business that was neglected due to his Alzheimer's before we even knew he had it. His kids are users which was a learned behavior from their bitter mother.
These circumstances have been difficult to understand and accept, but accepting them for who they are has made life easier for me. I will not allow it to destroy who I am....
The lesson here is it's their problem. Just because you are who you are Nikki, you can't understand anyone not being a caring, kind, compassionate person like you are. It is inconceivable to you because of who you are. You have reached out to them and now it is in their hands.
Don't change who you are....you are all such an inspiring group of women and men who are desperately trying to do the right thing for your spouse. It is not easy but you are all heroes. You are all my heroes....we will all be okay.